CRPS Institute in Manhattan
 

I emailed the CRPS Institute in Manhattan and hope they will see me. I don't know if they accept people who have had rsd for over three years, but I figure it's worth a try. I don't feel like my drs are trying to help me get better. They are just going through the motions and I want to get better. I'll keep you filled in in case you're interested. I live in NJ so it's not too far a drive and my husband can drive me. My immune system is crumbling and I read on the CRPS Inst of Manhattan site that they may see a link between rsd and another autoimmune disorder and something they are using to help treat it. Anyway, I hope they can help. Have a good night.

I hope they do accept you and it helps.

That is funny that you brought that up today ... when I was 10 or so I was diagnosed with jr.rhumitiod arthritis an autoimmune disorder. I have seen the papers I did have it, by 16 it went away mysteriously no clue why. Why I was amused was because my new doctor called today to ask me about it! I guess she missed the part in my records where I was retested after the accident it was one of the very first things we ruled out .

I wish something was closer to me for an rsd specialist the closest is San Diego I think around 6 hour drive for me.

I'm glad you've tried to get in there Renee, hopefully they have a larger repository of wisdom than your current docs :rolleyes: and can actually help a bit more.

There is a growing number of scientists convinced that CRPS has some kind of immuno-system malfunction going on. Why do some people recover quickly after initial onset, and others have it set in for life? There must be a reason. This thinking is the reason for the IVig trials (intra-venous immuno-globulin), and others, to try to boost the immune system in an effort to have your body actually start to heal itself. It's still theoretical for the most part, but that's why the trials are being done.

Good luck - I hope you get a speedy and positive response! If I were near the place, I'd be trying for it too...

Let us know how you get on.

Bram.

Ah let me know how it gos Renee. Ive thought about calling them and seeing how long there waiting list is to get on. But I see Shwartzmans team in PA this June, so im going to that apt and if im not satisfied then Ill either call that Dr in DC that does treatment (and you can get in quicker with her) or ill call this place in NY. All 3 of these locations are right around 1-2hrs from me, so it doesn't hurt to even see all 3 of them if that's what it takes to get this beast under control.

Thanks Nanc, Bram, LLynnia and Tos for your caring thoughts.
Nanc, Thanks for reading my post and always being such a good friend. You are always so kind and caring.
Llynnia, I was tested for rhuematoid arthritis because it runs in my family, but was told I don't have it. I have fibromyalgia, but that's not considered an auto-immune disorder. I don't think I have any other auto-immune disorder beside rsd. I think rsd is an auto-immune disorder because it is ruining my immune system. I glad that you don't have rheumatoid either.
Bram, You are so darn smart. You should be a doctor, seriously. You knew exactly what I was trying to say about the immune system and IVig trials. That's what this institute in Manhattan is exploring. If they let me, I will consider being a part of this trial. Thank you for explaining to me and everyone what this institute is trying to research. I'm not very good with words and not as smart as you. I really appreciate you explaining what I was trying to say.
And Tos, I hope that your visit to PA will be a good one. I hope they can help you. If you would let me know how it goes, maybe I'll check them out too. PA and DC aren't that far from me either. I first thought the Manhattan clinic would be too far, but at this point two hours is worth it if they can help make me feel better.
I will let you all know how it goes. So far, I have not heard back from them yet. I hope I hear from them and soon. Thanks again for your caring and support. I wish you all a pain free and peaceful night.

Hey Renee - I'm very interested to hear their response. Yes, please keep us posted. BTW, maybe I missed it, but do you have type I or II?

You all on the East Coast have so many more options for treatment and trials. That is awesome! Again, best of luck and keep us posted!

Hi Vrae. I will keep you posted. I was hoping they would have emailed me today, but maybe tomorrow they will. I'm not very good with patience, but am trying to do the best I can. I will let you know how it goes. I was told by my pm dr that I had CRPS Type I. But I didn't see anything online about this Manhattan Institute specifying Type I or Type II. I got the impression from what I read that they would take either if they think the person with rsd is a good candidate. I don't know though what that entails. I'll let you know as soon as I find out. I'm keeping my fingers crossed that maybe they can help us all someday. I hope you are doing okay and wish you all a good night.

oh no no, I was just curious about type. I'm sure they take both as they are so similar. Was it surgery that lead to it or something else?

I called and was told they do not accept my insurance; fees would all be applied to my out of network benefits and the estimated cost for an initial visit was more than $1,000. Most importantly, I'm not sure this place is legit. It appears to be an umbrella organization for a spine center!! That's what I discovered at least. The doctors themselves may be good, but how much do they really know CRPS.
You will be MUCH better off finding a quality pain management specialist at a major hospital like HSS and St. Lukes Roosevelt where they have a dedicated team treating CRPS patients and follow/offer CRPS treatments.

Sweet name

I thought that too!!! :D

Bram.

Bravo
 

Thanks Renee,

I would really care to know how your experience is if you follow through! Please do keep us posted. I am finding that those of us with RSD/CRPS that has gone on for "years" do have many autoimmune issues. I did also post that I have tested positive for some genetic mutations that tie into neuro and vascular disease... and I'm following up with extensive autoimmune testing. No one has a road map yet for what to do, but we are providing a great start. Bravo Renee and all of you who push through the barriers to understanding and treatment. May we all keep each other informed. So far, my biggest marker is MTHFR in relation... it is common in the population and strongly affects the ANS. While perhaps not curable,it can be treatable!

Best for all,:hug::grouphug:

Hana

I had a closed reduction on my right wrist, after breaking it in several places, after slipping and falling on the ice. One of the bones was almost poking through my skin on the top of my hand. There still is apparantly a floating fragment in my wrist, which cause sharp pains sometimes, but apparantly the dr who did the closed reduction thought this was okay. I have a crooked wrist, because it is malaligned and is immobile. I cannot bend it at all. And I cannot bend my fingers all the way. I was diagnosed with CRPS I by a pm dr about four months after the closed reduction. It's been a nightmare ever since. They think my rsd was triggered by the closed reduction on my wrist.

Thanks for the heads up. I just got an email from them today to call them to set up a consult. My husband is going to help me with the call because I have trouble comprehending things with all the pain meds I'm taking. I don't understand insurance either. Even without pain meds.lol. My husband does though and will talk to them. I'll let him know what you said. I don't want anyone touching my spine. I'm not as brave as Tessa with that Epidural procedure that she did. I have scoliosis and am too afraid of complications. But if they want me to try an infusion in my good arm with an IV, or try a new drug like neurondrate (sp?) I think I will let them. I'll keep you all posted. And thanks again everyone for caring so much.
PS: Welcome GotNerve! I like your name too. Cool Man.lol.:)

Will do! Im hoping to go to PA and try the IVIG aswell, as they also have the trials going on. If im not a candidate then I want to look at all options, which would of course include ketamine and I def want to talk to them about what Tessa is trying. Im not looking for a "temporary" solution, im looking for a more "permanent" one and Tessa so far has that down! I know all of this is experimental, but gotta try something and im looking for the something that's gonna last longer. Ive been in pain long enough and im tired of suffering. There more humane to animals then they are to people.

Thanks Tos. And thanks for letting me know about this institute. I will pray that you have success with your dr appts too! I think there is hope for all of us as long as we keep trying to find a cure. It's when we stay stagnant and let our fears stop us from trying that we don't move forward. My thoughts and prayers are always with all of you. WE CAN DO THIS!!!!! With love, Renee.

Good luck!

Let us know how the consultation goes :D

1or2
 

I have had RSD or whatever name they want to call it for almost 30 years now. RSD was the new name when I started out with it.
There were 2 types then with different names, plus different stages.

All these years and no progress..

I don't want to pour cold water on anyone's interest in this pain centre but it came up ages ago on these boards when it was first opened and I researched the doctors they have. I can't find my post so I will just very quickly say that I don't think this place really has anything like the specialist CRPS experience it claims.

The lead doctor's key clinical specialism is implanting spinal cord stimulators and spinal pain. That should tell you what the general "tone" of their treatment approach is likely to be. There is one doc who claims to have specialist CRPS knowledge but he isn't one of the regular names that appears on the quality research or clinical papers. The others doesn't seem to have any particular CRPS experience.

Don't let the fact it's called an "Institute"lead you to think it is necessarily anything special. It is a pain clinic but I don't see evidence of any true specialist CRPS expertise. There are specialist centres in the US but this isn't one of them.

Before spending a lot of money and energy, I think it would be wise to do plenty of research on the clinic and its doctors. If you want to see CRPS specialists, I think there are other places you could look at in the US. You need to think really hard about what exactly you are wanting/expecting to get out of going to see these or any other doctors at this stage in your CRPS journey. Be honest with yourself about that and search to see whether there is somewhere else that could suit your particular needs and goals better.

You can check the inclusion criteria for these trials online. This lets you check all of the specific criteria that you must meet in order to qualify for potential entry into any given trial. You will also find a list of all of the factors that would specifically exclude you from participating. These are listed on the database. It may save you some time and effort later.

Make sure that if you are considering involvement in a clinical trial, it is officially listed and regulated.

By all means take up the offer of a free initial consultation and find out about this clinic but remember there is no such thing as a free lunch!!! If it looks and sounds too good to be true then it will be too good to be true. Don't be pushed into anything. Too often places will promise miracles to get you hooked in but then the reality is something else entirely.

Please don't misunderstand what I am saying about clinical trials. I'm not making a criticism of this centre. I'm merely looking out for your safety and because I know a lot about clinical research rules and practice, I'm saying you need to check carefully before you get involved in any trial to ensure the people carrying out the research are properly regulated for your own safety. Even with a drug that shows promise, things can go wrong for people.

It is very important for your safety that if you decide to take part in a clinical trial that you are safe. Anyone conducting medical research and drug trials has to abide by comprehensive regulatory and ethical rules. This is why it is rare for a small commercial centre to run a trial.

I suspect that one of the doctors they have has an attending position at Beth Israel in NYC and that centre is involved in an IvIg clinical trial. It you are keen to look at being involved in such a trial this may be a route in, alternatively, contacting the named researcher at Beth Israel may be the fastest way and as I said you can check your eligibility online before you do anything else.

This centre has a rather outdated description of CRPS on their website which is one of the things that alerted me to raise a concern. I'm not saying don't go, just be careful and evaluate it objectively to keep yourself safe.

What do you think of Schwartzman's team of drs at Drexel? Ive been on a 3-4yr waiting list and I finally go in June. However last night I was having second thoughts and thinking about canceling the appt. Which I don't know would be very smart on my behalf. But im having "primary" issues with my first diagnoses and im thinking about going back to see a surgeon about scar tissue revision, not that it would help my RSD or many other issues. Its just all very confusing and I hate weeding threw all the problems.

Well, I called the CRPS Institute in Manhattan and a recording said that it was called the Manhattan Spine and Pain Center. Then I dialed the extension I was supposed to and a woman answered. She started explaining the CRPS procedure to me. First I would have to get all my medical records and give them to the drs there so they can confirm I have CRPS. Then if they think I'm a candidate, I go there and see the drs there as well as a psychologist. I was told that they are out of network and I would have to pay $700 up front. The psychologist's fee was separate. I then told the woman that I couldn't afford that and to just forget about it. What a bummer. Looks like you were right gotnverve and neurochic. Thanks for trying look out for me. I wish you were wrong only because I feel like this was my last hope, but you were right. I'm going to drown my sorrows in some chocolate and go to bed. I'm very depressed right now.

I'm sorry it turned out as it did. It gives me no joy to find that my suspicions were close to the mark. The place looks like a commercial clinic that has been set up to cash in on delivering expensive treatments for CRPS and that must include plenty of SCS placements given the experience and interests of the people staffing it. The truth is places like these just aren't set up to run or participate in clinical trials - they want to siphon off the commercially viable patients who will make them lots of money. Too many prey on the desperate and those who will pay anything to go and see yet someone else who might give them the new hope that they haven't found so far.

I don't know enough about what you were specifically looking for from this clinic to try and help with any other suggestions or ideas. I don't know which aspect of your CRPS you are hoping to try and find an improvement for. If you are determined you want to be involved in a clinical trial then use the WHO, FDA and NINDS websites to look for trials near you but check the inclusion and exclusion criteria carefully.

I know a knock back and the extinguishing of hope is desperately depressing but at least you are actually in no worse a position physically and medically than you were before you called them. If you can explain specifically what you aspects of your CRPS you would hope to improve perhaps there are other things people could recommend.

To Tos8

I am guessing you were asking me about my view of the team that used to be headed up by Dr Schwartzman at Drexel? All I can say because I have no personal experience is that at least that team has a longstanding genuine reputation for treating and researching CRPS. The head physician has retired and that can, of course, radically change the quality, effectiveness and make up of the clinic over time but it certainly seems to continue to have a decent reputation.

This all means they will be used to seeing different presentations of CRPS, they are based in a University teaching hospital type setting so they will be very used to handling clinical patient management and the endless demands of research work. There are some people on here who have expressed unhappiness with their care there but you need to evaluate that for yourself when you actually research it properly and/or meet the medical staff.

If you have been on the waiting list for 3/4 years, my personal view is that it would be madness not to use the appointment. You have nothing to lose and potentially everything to gain. There is no reason why you can't explain all of your complex wider issues and ask for their opinion in that context. Make the most of the chance to speak to their more experienced clinicians.

Be clear about why you are going there though and what you want from them. I'm sure that has changed since you went on the waiting list 3/4 years ago. Write it down in notes so you are clear and prepared. Have questions from your online research ready to ask. Make the most of the appointment and use it to objectively decide whether they have anything they can offer you which may help. You are not going to get a cure but they may have something that could help your symptom relief and hence your quality of life. Be realistic and weigh up remembering medical science still doesn't know what causes CRPS and you won't get a cure.

I'm real sorry about this Renee!! By the way.. I didn't see your comment above about not being brave - You certainly are brave!! Just because you and I choose different things doesn't make either of us braver than the other.

Never give up.. something might be right around the corner for you.
Tessa

Renee, I'm sorry that this institute didn't work out for you. It's always horrible to have hopes dashed, but when those hopes are to find some help for something as crazily cruel as CRPS the let-down is enormous. Try not to let it get you down for too long, there's research going on and good people looking at this. Not as many as we might want, but there is progress being made. Slowly.

If nothing else, you have publicly highlighted something that might otherwise have caught more folk out. It's important that crocks like that place are talked about and exposed. You just might have saved someone on this forum from spending a lot of money out for nothing, and even more disappointment than you feel. That's a good thing :)

I'm hopefully on an IVig trial, not starting for a few months yet though. It's definitely worth trying for I think, although you do have to be careful where you sign up. The world clinical research trial website is very informative, and you can be sure that wherever you go is a valid and professional unit.

Take care of yourself, and as others have said - don't give up. There's always got to be hope ;)

Bram.

Sorry it didn't work out! It sucks thinking you might find something or some place to help, only to have the dream stomped on :(

Hi Renee
 

This world unfortunate is full of people try to get the most they can out of the insurances,recommending unnecessary treatments or the most expensive one,at least you took precautions and did not run into it without making sure everything was legit,sorry did not work,but soon there will be something that make your condition improve,I really hope that,here in Los Angeles area there is a dr called dr Joshua prager he works in ucla medical center also part of the board selected by the state of California to regulate how crps/rsd patients medical treatment should be supervise ,approaches and how wc, and ssi should validate the fact,this patients are or will be permanent disable without a radical and aggresive treatments,so far in my case wc,they ucla medical don't take those cases unless everything is prior authorized by the insurance only like that,my insurance wc for this case doesn't belong to the network,I watched so many of his videos and debates with other doctors from other states in you tube and wishes he could see me,but no luck ,I recently was treated from a dr who was covering my pm md and he seen more updated with the treatments,but because I'm still waiting for a final report for an iMe I won't be able to switch des yet,his name Dr Carl Hess in Fullerton ,ca.also sound so advance and knowledge about the condition,I which with no doubt to change pm dr,but I have to wait,he is part of my ins network,he approaches treatment and different way and understand if you first injury is in my case right foot and ankle but crps develop because of that,scs generator gave me so much pain in my non crps leg he refers the condition as industrial,because of this you got that,is the first time in almost three years a dr instead of me pointing that fact he mentioned without me getting angry and keep telling I'm not ok because of the pain on my left side where the old battery packet was,felt relief when he mentioned and also created a plan for the upcoming treatment,unfortunately gallbladder issues came along the way,he told me to wait a little longer because gallbladder will create flare ups and I need to avoid that so soon will se him as long as my original md don't comeback sorry to said this,but I hope he retire and I can switch md without waiting for the iMe dr report,keep the faith,soon you will find the right dr,treatment and will not experience any more disappointment,non of us deserve that,we already have enough and God will lead us to the right place soon,we all hope that my friend,god bless you all :grouphug: and talk to you soon,your dearest friend eev or Jesika don't allow any negative though erase those smiles we are here fitting and as long as we keep fitting,no one will erase that joy of non giving up so smile,we have a new day to live on with pain,but still alive :winky:

First of all Renee im sorry it didn't turn out to be what you hoped for it to be. But you do have other options, you can call the GW hospital and call Dr Chin, I know several RSD patients have gone to her and have really liked her and the wait list isn't long. Or call Drexel in PA and get on the waiting list!

Neurochic, thankfully im used to university hospitals so I know how to handle all the "crap" that comes along with it, and theres always usually crap.

Dear Neurochic, Tessa, Bram, Fbodgrl, Eev and Tos and everyone else here on this forum,
I sorry I'm late posting this but I needed some time to come to terms with my disappointment of the so called institute for crps. I wanted to thank all of you for caring enough to try to cheer me up. Having you all for support means more to me then you'll ever know. And though having rsd has brought me to a painful and difficult new world, it has also brought me to all of you. And I find myself very blessed and lucky to have you all as my friends. Thank you again with all of my heart. With love, your friend, Renee.

I'm so sorry this happened Renee. Having your hopes crushed is horrible. Just remember that the failure is NOT yours, it is theirs, so there's nothing you could have done about this...at least you tried, and you've warned others on this forum about the place. Every cloud has a silver lining and all that :rolleyes:.

There will be something else. Never give up hope :)

Bram.

RSD RENEE, Not sure if this place was mentioned earlier in this thread or not, or whether it's close to you. (see link below)

http://rsdhealthcare.org/location.html

CRPS Institute is a sham
 

At least that was my impression when I phoned. They were quick to say they didnt accept insurance, and we're even quicker to find out how much my out of pocket benefits were for the up-front fees of $1,200 I would have to pay for the initial consult. From what I can tell, this is an umbrella organization for a privately managed spine center.

I thought the initial consultation was free, but after reading again after I talked to person as TSCI (this so called institute) I saw that only the review of my medical records was free. The initial consultation just for the drs was $700.00 and they didn't accept insurance. Then there was an additional charge for the psychologist. I guess I forgot to read between the lines. You'd think I'd have learned by now.

Renee (and others who have had contact with this 'Institute'), if you have time it might be good to send a report of your experience to the big CRPS sites like RSDorg etc. They must have had info about this place sent to them (ie marketing bumf), and it would be useful for them to hear a 'real' experience :rolleyes:. If they get a few saying similar stuff, they might warn more CRPS sufferers than we can reach here...

Just an idea ;)

Bram.